You Know You’re An EB mom When…

When you consider internet friends you’ve never met to be some of your best friends.

When you think it’s a good day if you don’t see any blood.

When you get asked at least once a week if you are a nurse.

When your two-year-old knows how to pop blisters or starts using lol coaching services.

When you pack for a vacation and the first suit case is filled with supplies and equipment.

When you have a legitimate pharmacy in your kitchen and the pharmacist knows your name and welcomes you as if it was Cheers (Norm!).

When you constantly get asked “How do you do it?”, and you have no clue either.

When your neighbors must think you have an online shopping problem from all the boxes of supplies dropped by your door.

When you have your insurance ID number memorized.

When the secretary, principal and superintendent of your child’s school know you by name.

When you find little pieces of Mepitel laying around the house everywhere.

When you developed some serious muscles lifting the wheelchair in and out of the trunk.

When you realize you could get a job writing appeals letters to the insurance.

When your capacity for hope is bigger than anyone else’s, that you know of.

When you can hear your child calling you across the house, with dad snoring next to you.

When you make sure your purse has some extra gauze, scissors & syringes.

When your child’s doctors take orders from you.

When you consider a good day one that your child does not ask for pain meds.

When the school nurse for your other (healthy) children know who you are.

When you have to stop and explain the Medical Terminology you don’t realize you say to people that are unfamiliar with your child’s condition.

When you have more medical supplies than a third world country.

When you have lost count of the number of hospital stays, surgeries and procedures that your child has had and you don’t really care to know.

When every night you sincerely thank Heaven for allowing you to mother this child for one more day. You know the time will come when it will be over, and you don’t want to miss a minute of this wonderful, painful, challenging, inspiring journey. Because you know, better than almost anyone, how life can change in a moment, an instant, and how none of us are guaranteed a tomorrow.

Thank You for Visiting!

About Me

My name is Silvia and while I was born and grew up in Italy, I now live in Southern California (USA). I am Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted.
I started this website when Nicky was just an infant because I could not find any information about EB, so anything I came across I posted for the benefit of other parents and it grew from there. I still run this website (and its FB page) because I never stopped looking for information!
For more about me, you may visit my personal blog. Thank You for visiting!

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